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This is my fatigue.

Fatigue is a symptom of many diseases. It significantly impacts my condition, Vasculitis (Granulomatosis with polyangiitis/Wegener’s and chronic periaortitis). Yet when I search for a definition, it is not easy to find a clear and straightforward medical classification for fatigue. There seems to be material on fatigue within different diseases and chronic fatigue syndrome, but not really a clear definition that fits the crippling impact fatigue has on my life.

So, as I have done before, I would like to share my experience, not because I know better than others, but because I know my situation, and maybe this is repeated in the lives of others. I have found it challenging to explain my fatigue to others. Perhaps writing it down will bring me some clarity and confidence when I speak with my clinical team.

Hopefully, I can improve on my usual description of “I just don’t feel right”.

My fatigue is a mix of physical and mental symptoms, sometimes it is not easy to split these two areas, but I will try. Often, I feel the physical is easier to describe, less subjective and more “believable”; I don’t really understand why I think this way, I just know that I do.

My physical symptoms

So physically, I feel heavy, lacking in energy and quickly exhausted. My arms and legs feel like they have weights hanging from them. Every action seems to take double the energy it should generally take. Often, I will get cramp in my fingers and toes or restless legs.

I feel tired, but extra sleep doesn’t help me feel better. I can fall asleep watching my favourite television shows; I just do not have the energy to keep my eyes open. My head just wants to flop to the side and rest peacefully.

I feel like I have run a marathon 20 minutes after I have gotten out of bed, and I feel like I want to curl back up and go to sleep. A shower leaves me exhausted and sweating. My head feels too heavy to carry.

My mental symptoms

I cry a lot; I feel hopeless and think I cannot carry on doing what I am doing. I want to give in and not keep fighting. Everything feels too much to handle; I am irritable and struggle to feel empathy for others.  I don’t want to start anything, and I don’t find joy in anything that I do start. A sadness comes over me, a feeling of being useless and not wanting to carry on as I am, worrying whether I will feel like this for the rest of my life.

I cannot think logically.

I don’t learn; I don’t remember that the fatigue lifts a little and that I am coping with everything thrown at me. When the fatigue hits hard, I don’t remember that I have been here before, and I have fought back from it before. It’s like my memory is wiped after each episode. Thankfully those around me are always there to remind me that this is all part of the illness.  

How do I describe it to clinicians?

Well, I am not very good at describing it! And maybe that is why clinicians don’t take it as a severe symptom of the illness. I use words like crashed, exhausted, not quite right, and knackered. None of these really do justice to the wide range of symptoms that I experience when the fatigue hits.

Because I cannot say which physical part of me hurts, I find it hard to describe all the little things that build up to me feeling horrible. I don’t want to be a hypochondriac or dramatic. So, a long list of minor issues makes me feel like I am trying to make this into something bigger than it is. But for me, it is big; it is debilitating. It pauses my life and leaves me virtually housebound at times (except for dog walks, previous post).   

 

What helps me?

My family help me. They remind me that it is part of the illness and that I will return to some normality. They help me physically, and they try to give me time to rest and recover. Cuddles from my children make me realise that I must keep positive and ‘get my fight back’ soon. My family help me both physically and mentally to get through the fatigue. The dogs are the reason for going outside and moving, no matter how tired I am, they need to go out. Sometimes it is a slow 20-minute wander down the street, but it does help.

As predictable as it sounds, eating well helps, a nice homecooked meal does make me feel brighter, and once I eat it, I am less likely to eat the lazy stuff that is not so healthy. My husband will make a superb Sunday lunch or a summer BBQ to try and take the pressure off. He loves volunteering to do the weekend cooking, mainly with a beer in hand ;-). Please don’t get me wrong, I am not saying food is medicine, but having a nutritious meal leaves me in a more positive mood.

Social media helps me sometimes, and sometimes it doesn’t. This seems strange to write when all we hear is that social media damages our mental health, but when you feel low and alone, somebody with the same illness on the end of your computer can make a difference. They can offer support as they understand how you feel and have been in your situation. I am very grateful to the special people I have met on social media platforms; they help me realise that I will be ok, and I hope that I help them in return.

An unexpected positive from long COVID-19

I hate to write about positives and COVID-19 as it has been the cruellest impact on our world and meant we have lost some very special people. But the medical research that will focus on long COVID-19 and how the immune system works. The research could lead to positive developments in auto-immune diseases and the treatment and management of fatigue across all disorders. I dream that the thousands of scientists examining the effects of this pandemic will lead to some tangible breakthroughs for those of us with long term conditions that present with fatigue in similar ways to COVID-19.

I would love to write a follow-up post with input from your experience. What symptoms do you have? Can you do things to make you feel better? Leave me a comment or message me directly, and I can collate.

Jx

Jane Edwards is the author of ‘Chronic Illness: Learning to live behind my smile’, a book about learning to live with a rare, invisible chronic illness.

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Long term illness and pets.

Dealing with long term illness can be lonely; your energy is zapped, hospital visits, medication side effects and disease symptoms. Just talking to people can be exhausting. Being out with people leaves me craving the comfort of darkness, dreaming of snuggling in my bed.

I am not antisocial; I just do not have the strength or energy for socialising.

My work leaves me drained, so the thought of going out at the end of the day is not something that I relish. One night out can leave me exhausted for several days.

The lack of energy makes it preferable to hide away rather than face the world and join in with friends.

What keeps me moving?

Well, no matter how tired or worn out I feel, there is one thing that makes me smile, my gorgeous black Labrador, George. He has made me smile for six years, every single day. We have recently added to the family and brought in a Cocker Spaniel called Burt. He is the archetypal puppy with a constant wagging tail and big pleading eyes.

Their energy and the gentle nudging with the soft nose make me go for daily walks. Even if it is a slow shuffle or a very short walk, they get me out of the house into the fresh air. They make me brush my hair and move my legs. It gets the heart pumping a little and means that I look at the sun and smile.

I know that without the enthusiastic encouragement from my canine friends, I wouldn’t leave the house some days. Without them, I would happily stay hidden away, avoiding reality. Even when I am really struggling, a short escape from the confines of the home brings a lightness to me and lifts my spirit.

Unconditional love.

It doesn’t have to be a loving Labrador or a crazy Cocker. It is just the responsibility of owning a pet, a commitment, a snuggle, the absolute and unconditional love. The fact that they don’t understand how much the illness has changed me or that I am limited in my physical actions. They don’t care that I need an afternoon snooze or that I have piled on too much weight after all the treatment. They just want to be with me; any version of me will do. They have no judgement of me.

Please do not get me wrong; I am not delusional, I know the dog is really driven by food, exercise and toilet needs and is not a human. But the knowledge that they don’t care about my history and keep me moving and going outside is good enough for me. There is an understanding, I see it when I am at my most fragile, and they respond to my change. Their needs reduce, and they go at my speed, almost like they know I need to do less than usual.

Dogs make great listeners

There are moments when the words I want to say are not suitable for human ears and when I need to shout and get my frustration out into the air around me. The dogs do not understand my words. But they are there; they listen and look at me with an understanding that I really need them in my life at that moment in time.

They have helped me to solve many a problem over the last few years. Yes, I know they cannot join in the discussion, but maybe that is the point; they are my sounding board to say exactly what is on my mind, without a filter.

Chronic illness leaves you hiding your honest thoughts because you feel guilty. You think you are boring those around you by always being ill, or you feel like you are constantly moaning. Dogs don’t care, you could say the same thing every day, and they would still wag their excitable tail.

Not a human replacement

When you read this, you may feel that I am a strange lady who has forgotten that dogs are animals. This is not so. I am fully aware that the dog is a dog, an animal. But there is a connection, and there are moments when just stoking their ears make me realise that life can feel positive and that there are possibilities for me in this world.

Dogs give me a nudge to join the real world, a nudge to get out, a nudge to face the world. And all those nudges mean that I go out into the human world, join in with human conversations and meet people.

We need human contact; we need to be part of a community, contribute, feel loved and be part of something bigger than our own life.

When we feel ill and our energy is low, it is very easy to hide away and say that we are too ill to join in. Some days this is the truth, and going out would be too much, but other days we could do it, but maybe we don’t feel that we can face the real world.

Go out and join the community

We must force ourselves out of our hideaway and join in, otherwise, we will disappear into a miserable, lonely world. We cannot live in total isolation. We are social animals, and maybe we need an animal to show us how to be social.

We could learn a lot from a loving, loyal Labrador and a crazy over-excited Cocker spaniel with a passion for life.

Go out and enjoy the world, as slowly as you need but go out, and maybe you will have a lovely conversation with a friendly animal or human along the way.

Thank you, Burt and George, for always making me smile.

Jx

Jane Edwards is the author of ‘Chronic Illness: Learning to live behind my smile’, a book about learning to live with a rare, invisible chronic illness.

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Interview with the UK Daily Mirror

‘Please carry on wearing masks after Freedom Day – it could save lives like mine’

EXCLUSIVE: Mum-of-two Jane Edwards is one of tens of thousands who say next week’s “Freedom Day” will in fact be the opposite, as she suffers from vasculitis, a disorder of the immune system which means vaccines may not be as effective for her

https://www.mirror.co.uk/news/uk-news/please-carry-wearing-masks-after-24533374

Thank you to Dave Burke for all the support.

Jx

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We wait for the COVID-19 vaccine to take control. But I hope for a different cure.

The world waits for the COVID-19 vaccines to make a difference. For immunisation to change our world and allow us to go back to reality, return to the office, go to the pub, fly away to the tropics, a normal life.

I have this feeling; I want an ordinary life. I want Covid to go away so that I can travel and visit my Mum and Sister and old friends. I desperately want this pandemic over and for science to take back control of the situation.

The last 12 months have been horrible for the world. Yet, it has taught us a lot about what we value and the fundamental importance of our community. It has forced us to look at our life and readjust. And now, as restrictions start to lift, hope is returning. The hope of ‘Freedom Day’. But, for some of us, ‘Freedom Day’ will not bring us freedom; instead, it will mean the exact opposite. It will bring back stringent restrictions to our lives. Population freedom results in a different outcome for those who are Clinical Extremely Vulnerable (CEV), and in my case, immune suppressed. We will need to go back into lockdown to maintain our safety. A self-imposed shielding but without governments supporting us financially or practically.

I am dreading ‘Freedom Day’ as the risk is still present. The risk that if I get COVID-19, I will not have a good outcome. CEV people feel thrown under the bus by the UK government; it is now clear to us that we are expendable.

For me, it is a nine-year restriction

I have spent nine years waiting for my cure.

I’m not waiting for a vaccine that thousands of scientists are working on. I’m waiting for a cure for a rare disease, a disease I had never heard of before I found out I had it. There are not tens of thousands of scientists working on my cure, maybe not even hundreds. My cure doesn’t make the headlines; it doesn’t feature on the news programs, unfortunately for those of us waiting.

I have been in various stages of lockdown for nine years, trying my hardest not to just wait for a cure.

I have avoided busy places for nine years, stayed away from anyone with a sniffle, needed to work from home. It has been draining and lonely, and they are many more people out there who live like me and many who have it worse and have lived with it longer. It is a gloomy world to exist within.

It isn’t a competition

I am not starting a competition here about whose life is more miserable. I am not asking for sympathy, nor am I undermining your experience of the pandemic. But, maybe, I would like you to realise how long-term illness impacts my life, permanently, that the pandemic has shown you a taste of how I live.

How lonely working from home can be, how unconnected you can feel when you are not at the party. The last nine years have been hard for me, and many, many people like me with illnesses that are rare or invisible or under-researched. We have found it hard to explain why our lives are complicated, why being trapped in this world is hard to deal with mentally and physically.

I would never wish an illness on anybody. I have never wanted anyone to fully understand all the things I have gone through. But now that friends and family have ‘tasted’ my life during the pandemic restrictions, they can understand my challenges.

I am waiting

So, as the world waits for the new COVID-19 vaccines to take effect and hopefully allow the world to return to hugging family, far away holidays and office nights out. I look forward to my friends and family escaping this prison that holds us all.

But I know my happiness is slightly tarnished. As everyone goes back into the world, I still live a life hidden away with exhaustion and a high risk of infection. And as Boris (UK Prime Minister) has now planned to lift all restrictions, this pushes me to be at substantial risk and again forces me back into hiding.

I commend the science world for how they have reacted and fought against the pandemic; it is truly inspirational.

I hope that the focus on the immune response to COVID-19 and the treatments can lead to something that can be used for my illness.

I hope that something can come out of this and lead to a cure. However, I rarely let myself think of a cure, as I cannot live with the disappointment of it not materialising.

I realise that this blog is a little selfish and maybe cruel to those who have struggled during this last year, but I needed to get it on paper, so I hope I haven’t offended anybody. Offence is not my intention. I wanted to share how I feel as everybody else escapes this lockdown. Some of us will be forced into some level of lockdown as restrictions ease, and that lockdown maybe for a very long time.

Stay safe.

Jx

Jane Edwards is the author of ‘Chronic Illness: Learning to live behind my smile’, about my life learning to live with a rare, invisible chronic illness.

Available on Amazon: https://www.amazon.co.uk/Chronic-illness-learning-behind-smile-ebook/dp/B07TTDTN78

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Prednisolone withdrawal.

Prednisolone, steroids, pred, miracle drug, whatever we call them, these drugs are powerful beasts. They may be small, but they are mighty. If they were a dog, they would be a chihuahua tiny but with a massive impact on your life. I have been on Prednisolone at various doses for nine years. They have left me swollen, overweight, irritable but alive, and there is the problem. Steroids have such horrible side effects, but they are miraculous at keeping me moving and alive.

They are cheap to prescribe, and so there is limited appetite to find a replacement for them. An inexpensive drug that Clinicians know will work. Patients dread them, to the point that each time a doctor has told me that I need to increase the dose, I have cried. This is the power of the emotion behind these tiny white circles. My disease was commonly fatal before the introduction of steroids. The immune suppression power is life saving.

My ugly drug

I have previously written about my medication in the form of the good, the bad and the ugly. If you haven’t read my book, my thyroxin is the good as I have never had any side effects, and I have this little dream that it will help me lose weight. The bad is cyclophosphamide (a chemotherapy drug) that made me so very sick; however, it did bring me a balance that I desperately needed.

Prednisolone is my ugly drug. The medication is so emotional; it says something very ugly to me every morning. It smiles at me whilst being horrible. Yes, I know this is not logical, but it is how this little tablet makes me feel, and I don’t think I am alone in these feelings.

Why is it so ugly?

Well, each time I increase the dose to prevent my vasculitis flaring, it breaks my heart. I wake up the following day, and my knees are swollen, and my whole body feels puffy and uncomfortable. I start to eat anything in sight, no matter how much I try to resist. I am irritable and erratic and really piss off all my family with the mood swings. None of this can be controlled. The lack of control of your own body is awful.  After many years of going through the increases, again and again, the knowledge that the next day I will feel like a different person breaks me every time.

Prednisolone is famous for disrupting your sleep routine, leading to many nights of sitting downstairs with a glass of water feeling very sorry for me.  The sleep loss feels like I have a baby again; once the sleep is disturbed, I cannot concentrate, talk or even function properly. It has such an impact on my life—pure misery.

And the final insult, looking into the mirror and seeing an enormous round moon face, swollen beyond recognition some days. I have put on three stone since my first prescription. Now I am not really a vain person, but this is the last straw for me on top of all the other symptoms. It is the reason for my lack of confidence and a severe lack of photos of me for nearly a decade.

Finally, below 7mg a day

My journey has been a rocky one, up and down, various doses from 40 mg a day to 8mg. For nine years, I have never gone below 7.5mg without flaring almost immediately. However, thanks to my consultant, my stubbornness and the introduction of an additional drug, hydroxychloroquine (usually used for Lupus), I am now below 7mg a day. I understand that this may not sound very exciting to others, but this is close to being one of the happiest moments in my life. I have gone so very slow in my reduction, but I will drop to 6mg a day within the next few weeks. I had stopped believing that I could ever get to this moment; it has taken so long.

It has taken 9 years to get to this point.

I can start to see a difference; my face has slimmed a little, the hump at the back of my neck has slightly reduced, and I have managed to lose nearly a stone. I still have a long way to go, but it feels like I may be able to reduce the dose to below 5mg at some future point. This is my dream.

Redundant Adrenal glands and other long-term effects

After nine years of any drug, you will experience side effects. Steroids are no different. I have some permanent damage and some damage that hopefully my body is busy correcting.

Bones, well, one of the main issues with Prednisolone is a reduction in your bone density. I am advised to do weight-bearing exercise to try to counteract this damage. I think I have done a good job protecting myself, walking the daft Labrador everywhere to prevent damage. I have some damage to my spine and possibly my hip, but I am determined not to be beaten, so I keep walking and riding an indoor bike; I just keep moving. Maybe my daily calcium boosting cappuccino (with skimmed milk) has helped with this situation.

Your bone density is checked by a Dexa scan; it is totally harmless and takes less than 30 minutes. It does feel a little like a scan from Star Trek, and I always want to ask if they can ‘beam me up, Scottie. My last one identified that I have osteoporosis but at a mild level.

Another severe side effect is that my adrenal glands have got lazy; your adrenal glands make cortisol. So, when you are pumped full of artificial steroids, the body doesn’t need to make them? It makes sense that they stop doing their job and go on strike as somebody else has taken their position. You can test how your adrenal glands are working with a Synacthen test. The test involves blood being taken, then an injection of a chemical to stimulate the adrenal glands; this makes me feel hot and flushed for a short time. Then 30 minutes later, you have another blood test, and you can go home. The blood tests show a base (the first blood test) and then the reaction (the second blood test), and this allows the doctors to see how you react and if your adrenal glands are bothered to work.

I have had these tests regularly over the last few years, and the results started off very bad. But slowly, as I have reduced my steroids, the results are improving. They are not ‘normal’ yet, but I am hopeful that if I continue with my slow reduction of steroids, I will get these damn glands working again.

My reliance on steroids means I must carry a warning card and a medical bracelet around with me. I have an emergency injection kit to get the needed drugs into my body if I cannot take the medication orally. The reliance on these drugs really makes me hate them even more.

My next stages for Prednisolone withdrawal

I need to keep healthy, avoid infections, not have a flare and slowly reduce the steroids. By slow, I mean 1mg/day reduction over about 4 months, so if I stick to this rate, I will still be on steroids for another two years.

I expect it will not go smoothly.

It will be a bumpy road, but I am ready for that; I have experience. But I will keep my determination, and any progress is good for me, no matter if it takes me another 10 years. Each slight reduction helps me in the longer term, but I must be careful not to cause a flare. Each flare causes more damage that cannot be undone. So slow and steady it is. Listening to my body and my intuition for the whole journey.

But after everything, I really do have a love-hate relationship with this medication. I hate it with a passion, it is so very ugly to me, yet I am so grateful that it has helped me attain some kind of ordinary life.

Please comment and let me know how you have got through the journey.


Stay safe.

Jx

Jane Edwards is the author of ‘Chronic Illness: Learning to live behind my smile‘, about a journey of learning to live with a rare, invisible chronic illness.

Steroid dependant

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Rituximab infusion, things I wish I had known

Please note this is my personal experience of Rituximab, your treatment may vary, you should discuss your individual plan with your doctor. I am not providing any personal advice.

So you need to have a biological infusion?

My first thoughts were:

  • What the hell is that?
  • How long will it take?
  • Will it hurt?

And the most important question:

  • Can I go to the toilet while I’m hooked up to the machine?

My infusion was called Rituximab (also known as Rituxan or MabThera), and it was to treat my ANCA associated Vasculitis. I had six of these infusions a few years ago, but I had totally forgotten the whole experience with this lifesaving drug. The Vasculitis UK patient group calls it Unicorn juice for its magical powers, which always makes me smile.

So what is a biological infusion?

Biological infusions target a specific immune reaction in your body which is causing the inflammation response. Rituximab is a genetically engineered chimeric monoclonal antibody which depletes the B cells which have the marker CD20 (a protein) on the surface of your cells. Rituximab sticks to the CD20 proteins, and the cells of the immune system pick out the marked cells and kill them. This reduces the immune system actions against us. This is all a little technical, but basically, it reduces your B cells and diminishes the immunes system ability to launch an attack on self (i.e. you).

How did I feel the days before and why did I need this treatment?

Before the treatment, my vasculitis was flaring, it affects my ears, nose, eyes, kidneys and the main aortic arch out of the heart. I am exhausted, I cannot think, I cannot walk up a small hill, and I cannot concentrate or remember the right words to say. I just want to sleep all the time, and I’m off my food even though my steroids are increased and therefore I should have an increase in appetite. I am desperate for something to make me feel better and to give me some energy.

It isn’t helping that my birthday is the day before the infusion, and my lovely husband is planning a meal out to celebrate… I go along with it and just accept that afterwards, I will sleep for a week. I’m secretly looking forward to the sleepy side-effect.

Getting prepared

You sit in a large chair for a long time during the infusion, so I would suggest you prepare by picking out your most comfortable clothes, fashion should be ignored. I choose a long tunic and leggings. Remember to wear sleeves which you can roll up to get the cannula in the crease of your elbow and to allow access for the nurses to check your blood pressure.  I went in slip-on shoes but took a pair of socks so that I would lie in the chair without my shoes on and not worry that everybody will have to look at my manky feet. Also, this will keep you warm, and then if you get too hot, you can take them off.

Arriving at hospital

For those who have read my book, you will be fully aware of my love of cappuccinos, we collected two large cappuccinos and Jaffa cakes on the way to the ward. We checked in at the ward reception and were allocated a chair number, a big blue thing that is comfortable but does get a little hot halfway through (or maybe that was just me overheating). Then you wait for the nurses to take your observations, blood pressure, oxygen levels (through your finger using a pulse oximeter) and the dreaded weigh-in.

I pop to the toilet before the next stage as it gets harder to go once you have a needle in the arm. You then have the cannula needle put in, mine was positioned at the elbow crease, but it can be in the back of your hand. This part is always a challenge as my veins seem to disappear as soon as somebody looks at them.

And that is it, you are ready for the treatment.

Treatment process

Well, it takes between 5-6 hours, but time flies, mainly because it really does knock you out. You are given Paracetamol, Methylprednisolone and Piriton (an antihistamine to reduce the risk of a reaction to the Rituximab) as pre-meds. Then a small amount of fluid is pushed through the cannula to check all is ok, next the drug is hooked up. It is a small bag, about 350ml, but it goes in slowly.

My last Rituximab was about 4 years ago, so the nurse explained that they would go slowly to ensure I didn’t have a reaction. If you have had a successful one recently, they can go faster. For my infusion two weeks later it went in quicker, it cut the time down by 45 minutes but going more quickly made me feel a little sick.

The nurse will check your blood pressure and oxygen levels every 30 minutes, and the machine will beep every 30 minutes to get a different nurse to come and set off the next 30 minutes. If you are tolerating the treatment well, every 30 minutes the drip rate of flow is slightly increased. So, although you are sleepy, you are never allowed to sleep for long, as your ‘vitals’ need checking all through the treatment.

Coffee and biscuits were brought round regularly, and sandwiches offered at lunch, my husband had popped off to buy lunch already, so I didn’t sample these.

Once the drug is fully infused, another short fluid flush is completed, and then once the cannula is removed, you can go home. Go steady, you have sat down for over 5 hours and may feel a little wobbly, but otherwise, you should feel quite ok. If not, please tell somebody.

And yes, you can go to the toilet throughout the infusion, but you remain hooked up to the infusion pump, so it is a bit of a tricky manoeuvre, think about a shopping trolley with a dodgy wheel in the supermarket.

Travel home and the evening

It is recommended that you do not drive, partly due to the Piriton causing drowsiness. I couldn’t keep my eyes open or my head up, probably not the safest way to drive! In the evening I ate quite well as the infusion didn’t seem to put me off my food, but I don’t think my conversation was up to much, I think my brain was somewhere else, probably over the rainbow. My parents-in-law were staying as they had collected my children from school, which was brilliant as it meant there was enough bustle in the house for me to go to bed super early and leave them all to it. Sleep came quickly and for a long time.

There are a few side-effects that you need to keep an eye out for, but if you have any concerns, please call your doctor immediately. Side-effects include risk of infection, diarrhoea, peripheral oedema (swelling), muscle spasms, arthralgia (joint pain), back pain, dizziness, tremor, insomnia, cough, dyspnoea (difficulty breathing), epistaxis (nose bleeds) and hypertension (high blood pressure)[i].

I had a little swelling in my fingers and lower part of my legs, and during the infusion, I got very hot halfway through. Both were manageable and didn’t really cause me any concerns.

Next few days

Well, I slept for Britain, a truly fantastic amount of sleep. I’m not sure scientifically the reason for this, part of it may be the antihistamine (Piriton) or it may be the infusion or the vasculitis flare. I also suspect that part of it is the fact that the treatment has allowed me to stop and rest. I always continue at such a pace, but once that drip is put up, I feel that it is my time to completely stop, to rest and to let the unicorn juice do its magic. The relief of letting everybody take the strain for a few days is unbelievable, so I suggest you go with this feeling and let your body rest, start to heal and trust your response to the treatment.

I was informed by my consultant that it can take between 4-6 weeks for the effects of the treatment to be felt, so do not expect instant results.

Enjoy your sleep. Goodnight and sweet dreams.

Fingers crossed it kicks vasculitis butt. 

Jane Xx

You can read more of my work, including my book Chronic Illness: learning to live behind my smile, via my website: www.chronicillness.co.uk

Vital information about vasculitis can be found on the Vasculitis UK Website: https://www.vasculitis.org.uk

Quick legal comment, this blog is my journey, none of the statements is personal advice for you, if you need personalised help, please speak with your doctor.

[i] https://www.nice.org.uk/Guidance/TA308

Go listen to my interview on Fight Like a Mama podcast.

A few weeks ago, the lovely Felicia Distad invited me to be part of her excellent podcast series.

She describes the podcast as:

Let’s talk about ALL THE THINGS. Health, family, friendships, kids, work, and how to show up every day and fight through it all. Lady, I’ll remind you that you can do hard things because we have already done hard things.

She also has vasculitis, the same type as me, Wegeners/GPA. We chat about our journey, living with kids and how to keep on fighting no matter what is thrown at you.

The episode that I feature in is here:

https://podcasts.apple.com/us/podcast/ep-33-chronic-illness-wegeners-vasculitis-series-jane/id1530311551?i=1000510578497

But please listen to the other episodes:

https://podcasts.apple.com/us/podcast/fight-like-a-mama-podcast/id1530311551

Follow Felicia on Instagram: https://www.instagram.com/fightlikeamama/?hl=en

Thank you Felicia for sharing my story.

Jane

Some days are flat

Some days I feel very flat, not flat-chested, flatlined or flat earthed, just plain flat; the feeling where you really don’t care what happens, what you eat or wear.

I’m not sure if you class it as fatigue, depression or some other title that may fit the mood. I don’t like to admit that any of these words apply to me, so it is merely a flat day. Maybe I am not feeling well, which is why I just cannot be bothered for a whole day, or perhaps it has nothing to do with my illness. I just don’t know.

I think we all have these days; COVID-19 has brought these days to us all, and they can be hard to deal with and accept.

What happens on a flat day?

The day starts with not really fancying breakfast, randomly staring into various cupboards trying to work out what to eat. I tend to go for lemon curd on toast with the hope that the sharp taste of lemon will kick start my day, it rarely does and typically tastes too sweet.

Next is the ‘force’ yourself to get showered and dressed. Showering is an effort and leads to me standing there, staring at the showerhead, hopeful that the hot water will awaken my senses. Often, it doesn’t have the desired effect.

The shower can be exhausting, so I need to sit down to rest. This is also met with my body being uncontrollably hot, which ruins the shower’s desired outcome.

Yet another reason to feel flat.

The choice of clothes does not matter just as long as they are practical and do the required job, i.e., keep me warm and presentable for a video call. Time spent on hair and makeup is minimal (If there is any effort at all). Priority is to get through the day without crash landing.

The day continues along these lines, everything requires a massive effort, and I am strangely unemotional about the whole shebang.

Don’t post on social media!

These days, my brain is working non-stop, all my worries come to the surface. Am I starting a flare? Is something seriously wrong? Why do I feel like this? How can I change these feelings? Can I get away with going back to bed?

I know these days are not positive, but I know that they will pass, and I will bounce back and be cheerful again. I am resilient, but some days there just isn’t the energy to face the world. Sometimes I post on social media, and the next day when I read it, I’m embarrassed by my message and quickly delete the comment as I hate the weakness it shows.

Why do I regret posting the reality? Probably because I don’t want sympathy or fuss, these days are hard, and I know that everybody has them. I don’t want my friends and family to worry that the illness has retaken hold. It is frustrating to never ‘get better’, this is an extension to that feeling. I want to be better and healthy again, but I also know this will probably never happen.

Let’s just get the day over.

I would prefer it if these days did not happen, but they do, and they will continue to happen. So, how can we cope? How do we just get them over? We want them to be finished as soon as possible and return to feeling a bit brighter. We can rarely cheer ourselves up on these days.

If I can, I try to indulge the feelings and let them play out, there are reasons for these days, so I think if I can let my body and mind process them, maybe I am doing the right thing. Sadly, most days are crammed full with an increasingly busy schedule and the number of possible PJ days are in short supply.

So, I do what I always do, put on a big smile, act like all is fine and go out and face the world.

Sometimes the world lifts my spirits, and sometimes it grinds me down further. Either way, I try to remember it is only one day.

Good morning.

The next day I wake up and feel different. So, I brush aside the previous day and blame the medication for my changing moods. Nobody wants to talk about illness and misery, so the day gets wiped from memory, until the next time.

This is my experience with a rare disease, but I feel that COVID-19 and lockdowns have brought this feeling to us all. Flat days will happen, it is how we react to them that will make us a little stronger or resilient.

Take care and stay safe from this horrible virus.

Jane Edwards is an author of ‘Chronic Illness: Learning to live behind my smile’, about a journey of learning to live with a rare, invisible chronic illness.

Hey Politicians, remember there are more than two sides to a story

I am so tired of governments assuming that we are on one side or the other of an argument! We are all either Brexiter or Remainer, believe COVID is real, or we don’t, and we are racist or not. There is an assumption that we pick a political party and cannot ever agree with the opposite party. And the politicians, well they just seem to actively disagree with the other parties for no genuine reason.

I am not sure about you, but I am very fed up with all these binary discussions. It became evident to me over the last few weeks that we need a more in-depth conversation. When there was a suspicion that ‘shielding’ in the UK for patients at high risk of damage from COVID was coming back into the mix, I was scared. Please see my previous blog on coming out of shielding. I wanted to hear other people’s opinions, so I asked a question on Twitter about who wanted it to go back into full shielded lockdown. The response was very mixed, and there were lots of reasons why arguments for both restarting shielding and remaining as-is. So, although the answer was yes or no, the reasons and the thoughts behind this are multiple and complex.

For such a simple question, the reasoning and thought that goes on behind is not at all simple. Yet, this isn’t shared in the press, the extreme stories are picked because they support one side of the argument, instead of representing people who fall somewhere in between the extremes.

Stop reducing the critical discussions to a headline

I know that we now live in a world where we can have information every minute of the day, but that does not excuse the lack of depth to the stories. I voted to remain in the EU, that does not mean I hate all those who voted for Brexit, and it does not mean that I think the EU is perfect. It means that when I weighed up all the pros and cons that are important to me, the remain argument had more positives. Yet when I listen to the debate, it is like there are only two opinions, Brexit or Remain. This binary choice does not represent the thoughts of people I speak too. There is more to discuss on this issue than a selection of two boxes on a ballot paper.

We do not live in a comic strip.

I have never felt driven to write about politics before, as I am not active in this arena. I prefer to write about things I know or have experienced. Still, the endless lies I am reading or politicians merely saying the opposite of their opponent is terrifying. We are facing many critical events in the world. I want to believe that the people who lead us are trying to do the best for the people they represent. I want to believe they are not just doing the best for their career.

Don’t create cartoon ‘baddies’ for us to hate just so you can come out as the hero, this is not what our world needs right now. We need care, empathy and a passion to do the right thing. We need great leaders who are not two-dimensional characters who have a good headline but no substance. We are facing some of the most challenging times in living memory, and I want to believe we will get through this with dignity and respect for others. I want to believe this, I really do.

But I think I am going to be disappointed.

Time for a change, or am I just naïve?

I feel it is time for a change, time to move away from only two options on the voting card, time to move away from being left or right. What is the right thing for each decision? In the UK I sometimes agree with the conservatives and sometimes with labour, I don’t agree with either entirely! And some days I strongly disagree with both.

How can we move forward and get some respect back for our politicians, how can we start to believe those who represent us are doing the best for us? Maybe things will never change, perhaps I am living in a dream world where respect and principles are a thing of the past.

Maybe I am naïve, and this is the way the world has always been, and it will always be this way. But I hope we are not stuck with this type of politics forever.

Jane Edwards is an author of ‘Chronic Illness: Learning to live behind my smile’, about a journey of learning to live with a rare, invisible chronic illness.

Coming out of shielding

I recently wrote a blog for the UK based Genetic Alliance about my feelings on coming out of ‘Shielding’ and how I feel I can return to life after the COVID 19 initial pandamic response.

Please have a read at the link below.

https://covid-19.geneticalliance.org.uk/news/coming-out-of-shielding/

COVID-19: Vulnerability and the Serenity Prayer

I have thought long and hard about how to approach this blog; it is such a hard situation to write about. Half of me wants to make it light and supportive, but half of me is terrified that I am sitting here waiting for death to arrive at my door. I’m immune-suppressed and classed as high-risk, the UK government has asked me to ‘shield’ for 12 weeks, minimum. This means I am not to leave my house for three months and should social distance from my family. This is a harsh message to receive and makes me feel very vulnerable and leaves my children petrified. Using the word petrified and it not being an over-exaggeration is a horrible state of affairs. 

This situation is not normal in any sense of the word. So, I have decided to split the blog in two, one for my fragile days and one for my more positive days in lockdown. 

I cannot ignore the truth of how vulnerable and fragile I am. 

I am ill, I have been ill for eight years, I have felt fragile and vulnerable for eight years, but I have always tried to ignore the fact that I have a serious, rare chronic illness. I am quite successful at pretending all is happy and healthy. However, receiving a letter from the government telling you to stay home, avoid your garden and social distance from your family, really does hit you hard. You are suddenly exceedingly aware of your own mortality; this is not a positive feeling. I am reading about patients being contacted by GP’s informing them that they will not be a priority for a ventilator should they get COVID-19. I understand the NHS have to make difficult decisions. Still, I would like to consider the difficult choices when I am in the situation, not right now when I am sitting with my children. I cannot tell you that I will be happy not to receive a ventilator. Of course, my answer right now is that I want to fight to the bitter end. I am aware that this isn’t everybody’s choice, we all have the right to make our own decisions. The issue is about timing, the community of people with ‘underlying health issues’ are scared, and I do not want to think that when I need help, it will not be there. 

For me, all this information is making me feel more anxious. I know that we cannot treat everybody to the same level of service that the UK Prime Minister received, but please don’t write me off before I start my fight.

In eight years of tests, treatment, setbacks, flares and horrible medication, I have never felt so vulnerable. I am scared. I have not left the house for 5 weeks, and I cannot comprehend the whole situation. I am trying to block the world out of my head, but the information is everywhere, and most of the information I see is not based on fact, and all this is breeding pure fear. 

Self-isolation and the Serenity Prayer.

On my more positive days, I am trying to find things to do, trying to keep myself busy and trying to keep my body moving. Some days I am successful at this, and other days I am genuinely dreadful. The self-discipline and determination to start each morning afresh are tough to find inside me. When you have nowhere to go, it is challenging to set a timetable or list of things to accomplish and actually stick to it. 

The world outside gets into your head and starts playing games. What if I catch it? What if my parents catch it? How can I stop the virus seeping into my life? How will my family and friends respond to it if they catch it? Will they get a mild case, or will they end up fighting for their life? This is all too much for me to cope with every day. For me, it is easier to try and imagine we are on a home vacation and ignore the news and social media. I am trying to concentrate on just the things I can influence. It is similar to the old Alcoholics Anonymous saying taken from the Serenity Prayer by Reinhold Niebuhr:  

God, give me grace to accept with serenity

 the things that cannot be changed,

 Courage to change the things

 which should be changed,

 and the Wisdom to distinguish

 the one from the other.

I CAN control my physical location (stay at home), my attitude, my schedule, my activity levels, and my diet. 

I CANNOT change how the virus acts in the world, what other people say or how we react physically to the virus. Therefore, it is a complete waste of my energy to worry about these things. 

Two sides to every story.

Some days I’m positive, and some days I just want to break down in tears, but I think this is the normal feeling for most people in April 2020, 

One day, we will look back at this time, when we were hit with a pandemic, we never seriously considered to be possible, and learn from our actions. I do not know what changes we will wake up to when we are released back into the world. Nevertheless, I am hopeful that the hate that has been brewing in the last few years globally will be rejected. I hope that we will come together to fight this universal crisis.

Something positive must come out of this horrible period of history.

Thank you for reading, please stay safe in these crazy times. 

Jane 

If you want to read more of my work, please view my book on Amazon, the book is available in 10 countries, the link takes you to the UK version. All other links are found here.